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If I understand your message correctly, then I think you are not alone. Are you saying you have only neurosarcoid and no sarc in any other systems ever? Then you are just like my husband! He does not have a confirmed diagnosis, but I think that's pretty difficult with neurosarcoid anyway because many of the tests can return a false negative. His neurologist is willing to call it a "clinical diagnosis", and he's going to try a first course of pred (or something else -- we think he reacts poorly to pred) in mid-December. He has no other signs of sarcoid (heart, lungs, etc.) and never has. Just the lesions in his brain (about 6 of them now, but we'll see what his December MRI shows).

Anyway, just wanted to let you know that you might not be as alone as you think.

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